It’s Been Almost a Year Since Dad Died…

I don’t think a day has gone by that I haven’t remembered that horrible last day, and yet the month leading up to that was kind of a trial run for what  Dad would deal with if he ended up in a nursing home… I’d never wish that on him.  There are a lot of nice nursing homes (I’ve worked in a few), and I have nothing against the nice ones at all… and can be a huge positive move when someone is mentally ready to make the decision.  But Dad had always been SO active.  Just six weeks before he died, he drove home from Florida in two days, ‘outrunning’ an ice storm.  He did all of the driving, though he had a friend with him for company . The second day, he drove from S. Georgia to home (near the IL/WI border) all in that second day. He never drove that far in one day when I was a kid, going to FL for Christmas vacations, when he felt OK.   He’d call me when he stopped for gas that second day, and ask me to look at the radar to see where the ‘ice line’ was… and he made it home by about 9 p.m.  He had been feeling bad, and wanted to get home to see his doctors (regular guy for the current stuff,  and oncologist  for routine follow ups after successful thyroid cancer treatment).   He felt bad.   He’d been in the hospital near Palm Beach for a couple of days, and it scared him.

The week before he died (when that wasn’t even on the radar), and after every other visitor had left, he asked me “what are you going to do with me?”   He’d been in rehab for about a week, after 3 weeks in the hospital.  I asked “What do you mean, what am I going to DO with you?”.   He asked about options if he couldn’t come home.   I had been making a lot of phone calls to various facilities that I knew were nice places with good reputations,  in the event dad couldn’t transfer with one assist (which he couldn’t at that time).  The one-person assist transfer was what would determine any real options.  I’d been getting quotes about hourly rates for Certified Nursing Assistants for 12-hour days; I would have stayed  during p.m. (and overnight hours)  after the CNA got hime more or less tucked in for the night, and his friend would have taken the morning/day ‘shift’ so Dad was never alone with a stranger. We figured out how long we could swing that financially (it wasn’t that much extra to keep him in his own house vs. a private room in a nursing home, estimating the costs for medications, doctor visits, etc– but nursing homes are EXPENSIVE.  The daily rate only includes room and board- no meds, therapies, doctor visits, etc).  But it all depended on him being able to transfer with one assist.   At that time, he didn’t even know if he was actually standing up straight during therapy, and was totally unable to transfer without two people AND equipment (for safety).   It wasn’t looking good for going home, but I was willing to arrange things  if he got well enough to go home.  He totally understood the one-person transfer requirement,.  He knew  that was the only reason he was able to care for mom at home, as well as travel with her in those later dementia years, was because she was an easy transfer.

Dad wasn’t a guy who would do well being subjected to other people’s schedules, the noise of call lights, and confused patients, having to wait to get something he asked for, confused patients wandering into his room, etc.    He would have been miserable in an institutional setting.  He would have missed his friends, church, and estate sales (though I’m sure his friends would have visited- still a huge emotional hurdle for someone who had been SO independent for so long).  This was a man who was always on the go.   Being stuck in a wheelchair, dependent for basic mobility/personal needs, and the noise would have been intolerable to him.  He was already having trouble hanging in there with the hospital “routine”.   He didn’t understand the process of what happens when a doctor writes an order for a new pain med (or anything else).  He hurt and didn’t see why it took so long for the doc to write the order, the unit clerk to send the order to the pharmacy, the pharmacy tech to fill it, the pharmacist to check it and call the doc if there were any issues – which meant the doc had to return the call, sending it back to the floor Dad was on, the nurse checking the medication, and then dealing with the thing that was like a medication vending machine, requiring scanning Dad’s arm band,  scanning the medication, and then marking that it had been given ( and being only one of 5-6 patients his nurse was keeping up with).  On a good day, that could take over an hour… standard hospital operations.  In a nursing home, a new prescription would likely arrive late at night with the routine pharmacy deliveries, though nursing homes are required per state regulations to keep initial doses of some of the more common meds to hold someone over until the deliveries came.   There are reasons things take so long, but that is of little help  to someone who just wants to feel better.

There was also the issue of  a private room – something Dad would panic about because of his uber sensitive hearing- misophonia- where ‘routine noises’ like snoring roommates, gum chewing, chattering visitors for the roommate, chatting in the room with his friends,  etc were actually way more than annoying to him .   They almost caused a panic reaction, and more than once his blood pressure went very high just because someone was chewing/snapping gum close enough that he could hear it.  He couldn’t help it.   He didn’t have any control over the reactions, which could be rather angry and cause physical symptoms.  So a private room in the hospital or any facility was “mandatory” to him.   He’d literally beg me to “promise I get a private room”  when he was in the ER, and I told him I’d do what I could, and then I’d beg the admitting doc to write the order for a private room, explaining the situation.   They were always accommodating, but hospitals and nursing homes MUST  save some private rooms for infectious patients – or  like  in my case with the leukemia, minimizing exposure to ‘outside’ people  who may have had  a minor cold, or a sick kid at home.   Fortunately, he got private rooms- and I had to explain many times, to whoever I was talking to that it wasn’t a ‘snob’ thing, or that he was the sort to isolate… it was actually a painful situation to hear certain noises.

I think dad knew that he wasn’t ever  going to  go home.  In those quiet early evenings alone with him in the hospital or rehab hospital, he’d give me lists of some of his possessions that he wanted specific people to have.  We had  always had a very open relationship about ‘end of life’  decisions, other health topics, or whatever,  so I didn’t think it was that odd.  And  fear can be expressed in ‘final wishes’, even if someone is expected to recover.  It didn’t strike me as odd.   I just kept making notes.   I’m so glad I did.

Backtracking a bit, that first night in the hospital (March 3, 2016), he was terrified.  He asked me to look at his feet, and I said I’d be happy to, but wondered what I was looking for.  He asked if his feet looked like my mom’s did during her final 30 hours.  Hers had been mottled with the coloring I’d seen many, many times in people who were very close to death.   I told him that his feet looked fine, and were warm,  had good general color, had good capillary refill (how fast it takes for the color to return to normal, after  enough gentle pressure  to make the skin turn very pale), etc.  He was so terrified.  I made a promise to him that night that no matter what,  I’d be honest with him about what was going on, and if my nursing experience wasn’t enough to know the answer, I’d find out and tell him.    He told me that I helped ‘calm him’.  I wasn’t able to be up at the hospital as much as I wanted to (mobility issues, heat intolerance, needing the wheelchair, increasing pain the more consecutive days I went up there, etc), though we talked daily.  I talked to his nurses (which he wasn’t that thrilled about if they were in the room, as the “racket” of discussing his care/condition annoyed him- or, my favorite- “don’t bother them”… he never quite got comfortable with the idea of telling them he needed or wanted something, unless it was for pain- and Dad didn’t even own Tylenol… he had little frame of reference with pain,and generally waited too long to ask for something). I had phone calls from the social worker working on discharge planning, and other behind the scenes stuff- getting rid of the ancient food in his fridge (and replacing it as promised), getting stuff he wanted from home, and checking in to things as he requested.

One late afternoon, he told me he needed the urinal, so I got it for him and told him I’d be in the hall by the door so he could let me know when he was done.  He told me that all dignity he had was shot, and didn’t care if I stayed… but he was my DAD ❤  I wasn’t going to not give him privacy.  He had the sheet covering him, but still…  His only complaint was that I hadn’t let the leg part of the bed down… “Can you fix this so I’m not peeing uphill?”…. Yep, Dad,  I can do that.  🙂  He hated having   to  ask for any sort of assistance for basic daily needs.  I could tell that it was wearing down.    He felt helpless, and that just wasn’t  Dad.

ALL of these things help in a way for my grief process (I don’t mean that to sound selfish)… Dad would have been miserable in a nursing home IF he’d been able to survive any type of surgery.  He likely would have ended up with a colostomy, and whatever was going on with his spine wouldn’t have gotten better.  We never did know what the lesions pressing on his spinal cord were…. he’d had biopsies of all sorts of things, MRIs (that’s a whole other story), bloodwork,  ultrasounds, and whatnot.   It wasn’t for lack of trying that the cause of those spine lesions wasn’t found.   As much as I miss Dad, I know that being in “the home” would have broken his heart.  He would have put up a socially acceptable front, at least for a while.  He was such a great social person.

It also helps that the ER docs were so amazing in how they tried everything they could to make sure that nothing was overlooked when he was admitted that last time.   They called four additional specialists (urology, infections disease, surgeon, and gastroenterologist if I remember right- I know it was four).  They pulled me out of the room, and were SO amazing in helping me make the decision that was really already made by the disease process.  They made sure I knew what was going on, though when I saw the lab work and  heard that the infection from the ruptured diverticula  had gotten to his blood, and many other places... I knew.  I let them know I was an RN (disabled, but keep my license active).  I understood the ‘head’ stuff.  My ‘heart’ was a mess… but Dad and I had talked about what he wanted, and I promised him I’d do whatever that was.  I did.

His doc during the hospital stay prior to rehab were also amazing, from his regular oncologist to the rotating hospitalists and specialists.  He got good care.  One of the nurses went above and beyond when he found out Dad liked Heath bars… he’d seen some of the mini ones in a bowl at the nurses station, and snagged some for dad.
I’ve mentioned this before, but it’s something that goes through my head a lot (along with the initial delirium, when the mentally intact man I’d talked to less than 10 hours earlier was incapable of making decisions).  I was pulled out of the ER room so the docs could tell me what the CT showed.   Dad was resting quietly at the time (after a wild time getting the IV in so they could give him pain meds), but I went back in and told him that the docs knew what was going on but they couldn’t fix him.  HIs eyes were closed, but he nodded when I asked if we were still on board to get through this with as much comfort as possible.  He nodded when I asked if he was ready to see Mom.   I promised I wouldn’t leave.

Those last few hours  were (and still are)  precious.  A couple of Dad’s very close friends, and his cousin had been up to see him.   I just watched, talked  to him a little, held his hand, kept his lips moistened, and whatnot.  Some say that being there when someone dies is’t really for the dying person;  it’s for who is left behind.   I’m not sure i agree with that completely, but it is true that I would have been devastated if I hadn’t been there for him, if he had died alone.    Whether or not he heard me didn’t matter nearly as much as  it did to know that he wasn’t alone.   He was showing some signs of abnormal brain activity (snout reflex when I used the swabs to clean his mouth).   The toxins were taking him.

I miss him so much, and yet I’m thankful that he didn’t end up in a nursing home.  He would have felt  so defeated.   He wanted a quick death (who doesn’t ?).  While the back pain had been around for months, the infection that killed him didn’t get to the point of  him being really sick until those last couple of  days.   He had time to give me more instructions, and spend time with close friends and family.   He didn’t “linger” which is what he wanted.   The Palliative Care team at Swede’s was fantastic.   They included me in nearly every decision.  That helped me feel like I was an active part of   dad’s final  wishes.   So yeah, I guess that being close is more for those left behind- but at the same time, you never know how much hearing remains, or what senses are ‘enough’ for the patient to know that they’re not alone.   And I had to keep my promise.

*** please pardon any typos… my eyes are ‘swimming’ as I’m ready for bed.  I’ll fix them tomorrow 😉

My Earthly Rock… Part One

The last couple of months have been heart wrenching.  My dad died.  He was 83 years young, and until the end, he was very active.  A couple of weeks before he went to the hospital, he drove from south Florida to northern Illinois in two days, covering the distance from south Georgia to home in one day to outrun a snow/ice storm.   He had always been my biggest ‘cheerleader’ from the time he and mom got me at 10 days old until he died.  But let me back up a bit.

My dad had always been pretty healthy.  He had the standard appendectomy and gallbladder surgeries.  He did have a bout with thyroid cancer a few years ago, that required surgery and radiation, but he was considered to be cancer free with the scans monitoring his situation.   This is a guy who didn’t even own a bottle of Tylenol for a long time, and when he started having some unexplained back pain several months ago, he finally gave in and got some Aleve.   When he called his primary doc about the back pain in November 2015, the doc ordered muscle relaxants over the phone- for a guy who had no history of chronic back pain, and did have a history of cancer.  I wasn’t (and still am not) very happy about that.  I feel he should have been seen in person.  Just as a matter of good care for something that wasn’t part of dad’s history.  Dad just sucked it up and dealt with it.

He felt good enough to go to Florida after Christmas with his female acquaintance, whose daughter and son-in-law have a condo overlooking the ocean.  During his time there, he had what was felt to be food poisoning, and did a two night stint in the hospital down there, staying an extra night when he got too dizzy in the elevator when leaving the first time for them to actually let him go.  He felt bad enough after that to want to get home as soon as possible,  to see his own doctor who finally ordered an x-ray when he got back.  X-rays really aren’t that great for back pain unless there is a fracture of some sort, or the discs are showing degenerative changes (which is the very basic place to start with diagnostic testing).  The x-ray didn’t show much besides some normal aging changes.  The doc also gave dad some pain meds, which did help a bit.  But dad got worse.

On March 1 (a Tuesday), dad asked me to go to see his doctor with him (being the family RN, dad liked it when I could explain things to him after appointments in language that made more sense to someone not in the medical field).  He was able to walk into the office and perform all of the tests with no difficulty aside from some pain with specific movements.  The pain was mostly to the left of his spinal column in the chest portion of his spine (in the back).   The doc ordered an MRI, which dad did NOT like, because of claustrophobia, but it was the best thing he could have ordered…. and would have been much more useful a few months earlier.

The next day, dad called me to say that he woke up with his legs feeling weird, like he couldn’t feel them very well, but it had eased over the course of the day.  He chalked it up to the muscle relaxant he’d taken before bed the night before, and decided not to take any more of them.  The next day, Thursday March 3, dad called me at 8:00 a.m.  Anybody who knows me knows that I’m a night owl normally, and getting up around noon was my usual routine.  Dad always respected that, so I knew that if he was calling, something was really wrong.   He said he couldn’t walk right.  He’d gotten to the bathroom, but needed me to get over there as soon as I could.  I asked him if I had time for a shower, and he said yes.  I had already figured that going to the ER was the only logical thing to do at that point, and was getting ready for a day at the hospital, minimum.  When I got there, dad was sitting on the bed.  He stood up, and it was like watching someone try to stand on an inner tube in a swimming pool.   I told him to sit down, and just let me know what he needed to get ready to go to the ER via 911- it was going to be the safest way to transport him, as well as avoid the waiting room.   After he shaved and had a bowl of cereal, we got a few things put into a bag in case they kept him (I couldn’t imagine them not keeping him since he lived alone, I’m disabled enough that caring for him would be not very logical no matter how much I wanted to, and he needed to know why this was all happening… he needed tests).  Then EMS came for him, and I followed the ambulance to the hospital.

The usual ER things were done (IV, labs, x-rays), and then they ordered an MRI.  Dad was not amused, and was very anxious about the whole thing.  He’d gotten some pain meds, anxiety meds, and nausea meds, along with a washcloth over his eyes, and by the time he went to the MRI I don’t think he would have cared if they put him in a coal mine shaft.  He said it wasn’t so bad.  The results weren’t so good.  They’d only done the lower spine in the ER, as they can only test for emergent problems- and there were some ‘suspicious’ lesions in his lower spine.  It was enough to admit him.   And enough to scare him.

His oncologist (he requested) has been a family friend for decades, as well as my mom’s and my oncologist at times (mom died in 2003 after 17 years cancer free).   The good doc came up that evening, and suspected that dad had multiple myeloma based on the type of tumor he’d had in his thyroid gland a few years earlier, and the looks of the initial MRI.  He also said that they needed to get an MRI of the rest of his spine, since the area where dad had the most pain was higher up.  Dad has always been terrified of hearing ‘multiple myeloma’ since his mom died from that (with amyloidosis complicating things the most) in 1979.  SO much has changed in treating MM since then, and “Bob” (oncologist- not real name) said that if it was MM, that dad could have a good quality of life with chemotherapy pills.   But first,  more testing with the MRI being the one dad was most nervous about.

It took a couple of days to get dad through the MRI, but when they got it, they saw a lesion pressing ON dad’s spinal cord at T-7, causing the pain, as well as inability to feel where his feet were when he was trying to walk.  He could move his legs, and had good strength when pressing or pulling against the doc’s (or my) hands.  The pain at this point was the worst, but only really bad if he had to move.  I’d never seen him in so much pain, and in 20 years of working as an RN, I don’t know if I’d seen too many other people with that level of pain.  Even my chronic pain (which is a different beast altogether) paled in comparison (and I don’t condone comparing pain, as everybody feels it differently in accordance with their own very personal frame of reference).  But dad turned pale, and grimaced to the point of not recognizing him if I hadn’t been there when it happened.  He was immediately scheduled to start radiation to shrink the mass within a couple of hours of the MRI being done and read.   Biopsies were done of various areas in the spine and bone marrow, and the hope was still that dad was going to be able to go to the rehab hospital, and eventually return home.   At least that was what we were aiming for, and “Bob” was optimistic at that point.

Dad was in the hospital for about three weeks before being sent to the rehab hospital (NOT a nursing home with physical and occupational therapy, which are fine for many things, but not intensive rehab).   He was still very understandably terrified, but gave it his all once he knew that the rehab hospital would  only work with him if he could do three hours of therapy a day (broken up into four sessions between PT and OT).   He didn’t believe he’d be OK, but knew he had to work as if he believed if he wanted any chance at going home (with help if needed), and not a nursing home.   So, he worked as hard as he could, and was transferred to Van Matre Rehab Hospital for the next stage in his excruciating journey.

…. on to Part Two.